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The Case for De-Identifying Personal Health Information

Authors: Khaled El Emam; Elizabeth Jonker; Anita Fineberg;

The Case for De-Identifying Personal Health Information

Abstract

The demand on data custodians to disclose health information for secondary purposes is increasing dramatically. These demands come from researchers, public health professionals, commercial actors, and governments. In many jurisdictions, de-identification is one set of methods that can be used to allow the use and disclosure of health information without consent. This report describes the reasons why it is desirable or necessary to de-identify health data before disclosing or using it for secondary purposes. The scenarios we consider reflect the most common conditions under which a custodian would want to de-identify the data. These include an assessment of alternatives, such as consent, on-site access, and remote access to data, the impacts of data breaches and breach notification, unplanned and unexpected uses of data by the public and private sectors, and public perception and trust.

  • BIP!
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    selected citations
    These citations are derived from selected sources.
    This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    5
    popularity
    This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
    Average
    influence
    This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    Average
    impulse
    This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
    Average
Powered by OpenAIRE graph
Found an issue? Give us feedback
selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
5
Average
Average
Average
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